enabling brain injury survivors to help each other

Sam’s Story

RTA leading to craniotomy in 1996 (a surgical operation in which a bone flap is temporarily removed from the skull to access the brain). Bone flap replaced towards end of ’96.

6 years later (some point in 2002) the bone cement holding bone flap broke and the bone flap loosened, causing significant problems for 7 years (right up to 2009). This was finally diagnosed as Syndrome of the Trephined (SoT) in late 2008.

The syndrome of the trephined (SoT), also known as the “syndrome of the sinking skin flap” (SSSF) or “motor trephined syndrome”, is defined as a neurological deterioration following large craniectomy. It may arise within weeks to months after the craniectomy, but rapidly improved after cranioplasty.

SoT is a very unusual syndrome in which neurological deterioration occurs following removal of a large skull bone flap

In 2008, Brain Injury Survivor 3 had Craniotomy treatment (bone flap fixed in place with small metal plates), but this procedure led to an infection, so the bone flap was removed and SoT returned. Cranioplasty put in place in mid-2009.

KEY CHALLENGES

At the outset of suffering with SoT, Brain injury Survivor 3 was labelled drunk by one GP, and given a diagnosis of ‘abnormal illness behaviour’ by a neuro psychiatrist.

SoT completely disappeared and Brain Injury Survivor 3 returned to work for several years (2009 – 2014) until a further infection in 2014 led to the plate being removed, and SoT returned again.

New cranioplasty was in place early Autumn 2014, leading to further infection, removal, and chronic SoT.

Successful cranioplasty in place March 2015, which so far has been fine and Brain Injury Survivor 3 has returned to work.

It is impossible to signpost any particular clinician as being good or bad. Ideally, the physical injury would have been fixed within 12 months of the accident, and have lasted with no further problems for the rest of my life. However, to date it has lasted nearly 20 years. During this time I have developed a good knowledge of my condition, medical history and the neuro pathway within the NHS. This has finally helped me get the right treatment. I cannot recommend enough the importance of successful self management of symptoms; paying particular attention to sleep, and diet. Also, when fatigue, mood and other issues aren’t too great a barrier, physical and mental exercise are very important aspects of maintaining wellbeing. Another word of caution is to be aware that all neurologists are not the same – they all have different clinical pressures, knowledge and experience. It may take perseverance to find the right person.

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